Friday, August 2, 2013

"Leukemia Sucks, Down Syndrome Doesn't"

While many people are still confused and deciding whether they want to silence the Down syndrome chromosome.
I would like to offer this suggestion....
Cure Childhood Cancer
because it actually kills children and give them years of a living hell.
Link up to Alex's Lemonade Stand  and send them your research dollar donation or St. Baldricks, or Cure Search.
"Leukemia Sucks, Down syndrome doesn't. "
Words Gabriel spoke at the Club 21 fundraising dinner a few months ago.
A speech he wrote.
Perspective.
He has it. He lives it. I don't.
He knows about the research to find a cure for Leukemia.
He supports it, dreams about it, wants it.
He is sick of and sick from Cancer, not Down syndrome.
He wants his old normal self back.
Yes, I did say normal.
That word normal - when we attach it to a person with Down syndrome suddenly the word normal turns to the word perfect. (These words I stole from my husbands one man show)
My son is normal. I am normal. You are normal.
He watches old home movies of his life before Leukemia.
He refers to times back before Leukemia.
When everything was good.
Good and normal.
Give me some advice.
Do we tell him about the research to cure Down syndrome too?
How scientists are trying to erase the good and normal part of his life?
How do we explain it all?
I now feel the need to stress to you how healthy he was prior to Leukemia.
A normal,healthy boy with Down syndrome.
Research shows his extra chromosome is valuable
to possibly help find a cure for diseases like Leukemia or Altzheimers.
He has one and might get the other.
Research is also being done to erase that extra chromosome.
Sooooo his extra chromosome isn't valuable anymore?
But should we save that extra chromosome? Put it in a database? Filed away safely of course...
A dilemma.
Which do we do first, Mr. Scientist?
Cure the disease or rid the syndrome?
Kill the disease or kill the syndrome?
Where is your money going?
Are they one and the same?
We know about the recent push for research money specifically for childhood cancer, this was quickly identified and addressed. Childhood cancer is different than adult cancer. The money wasn't being shared. We support research for all cures of any cancer,who wouldn't? Ultimately, lets get rid of all of it. But we want a choice where our money goes and of course we want transparency in the organizations and how they use the money. Makes sense. People spoke. Done.
Now the comparision.
Honestly, I feel foolish. I didn't know about all the different research going on in Down syndrome world. We have some communication problems in our old blue blood charities.
I foolishly believed the research was being done only to enhance cognition, to help the brain synapse better, or to find a cure for Altzheimers or Leukemia. I was cautiously interested as long as the individual with Ds was respected for their personhood. But like so many things in the Ds club, the bigger picture reveals so much more. This is why I wait. This is why I make the distinction: Cancer kills children, Down syndrome doesn't.
Insert photo of my bald headed child here.





Heal this kid. Help this kid. He has cancer.
I have no problem saying this about finding a cure for cancer.
Insert photo of my son with Down syndrome here




Heal this kid. Help this kid. He has Down syndrome.
I have a big problem with saying find a cure for Down syndrome.
Then you will hear this Mama roar.
In fact we did have this happen on quite a few occasions.
And I am so sorry to classify these horrible people with the Christian title but this is how they presented themselves, before their God inspired presentation to us to pray away the Down syndrome....
"Cause God don't make no junk"
"God said he makes us perfect and in his image"
"God says he can heal everything. He didn't have an asterisk there"
Maybe you will understand why I am a little sensitive when the research talk starts speaking of Down syndrome as a project, or a thing, or a loudness that is needing to be silenced.
TMI
Too Much Information
Makes me queasy.
NEI
Not Enough Information
Makes me queasy.
Research has given me Zofran to combat this queasiness.
I shall take some and wait.
I shall wait for a cure for Cancer.
I shall work for a cure for Cancer.
I shall work to erase and silence Cancer in children.
Cancer is a horrible sound.
Down syndrome has a sound I love.
I am listening.
"Leukemia Sucks.
Down Syndrome Doesn't"








- Posted using BlogPress from my iPad

3 comments:

  1. Right to the heart of it, as usual. Leukemia sucks. Big time. But your boy sure doesn't. He is a warrior.

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